CONTACT

************************  UPDATE  *************************


1/6/17: I am overwhelmed, I am not well (dealing with my own recurrence), I am not able to respond, and I can no longer support the volume and intensity of patient e-mails. Thank you for your understanding.

        
               ************************************************************************

I'm so glad you found me, that means you're searching for more answers about your diagnosis! I hope you never stop searching for the truth in your journey, and that you follow your instincts. There are literally hundreds of thousands of combinations of treatments, be it conventional, off-label, supplements, mind-body work, etc. Who knows what combination is best for you!

Before you reach out to me with questions, please search the blog for your own answers. 



If you have a specific question that you couldn't answer from the search feature, please comment below on the blog, and I'll get back to you. 


70 comments:

  1. Dottonello765@gmail.com

    Jess, I have no tumor, but extensive experience in the life of cancer. I am also a budding neuroscientist and my dream was to be a neurologist. If you need a friend or someone to reach out to, I check this email regularly.
    Rooting for you and yours.
    --Dominique

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    Replies
    1. Dominique, Thank you! I would love to keep in touch. I'm glad you reached out. I do love neuroscientists - and people in general. :)

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    2. Bourg Camille : camillejulietteb@gmail.com

      Hello Jessica,
      My name is Camille, i'm French and i'm 20 years old.
      I underwent surgery complete with stage glioblastoma 4. Today I make Stupp protocol. However I would like to have contacts with medical centers in Germany offering such vaccine treatments for glioblastoma. I thank you in advance. Camille.

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    3. Camille, I just emailed you some information. I hope it helps! And good luck, I'll keep you in my thoughts and prayers.

      Delete
  2. Hello ,
    I sent a comment yesterday and don't see it here..
    My brother was diagnosed with Anaplastic Astrocytoma
    He just received his first dendritic cell
    Vaccine the past Wednesday with Dr Chang.
    My other brother, Simon, met you outside Dr Chang
    Office and briefly chatted with you.

    Would it be possible please to have Avner speak with you?
    He is eager to meet people who received
    A similar treatment and to be inspired.
    The hardest part for him, and us, his family, is the emotional
    Distress he is experiencing.
    Please respnd to me either via email or phone if it's ok with you .

    aabeckaser01@gmail.com
    718-501-4107

    Many thanks
    Gd bless
    Anat

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    Replies
    1. Anat, Of course I'll talk to your brother! I'll email immediately.

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  3. Hey! I am surprised I have not run past your blog before! Are you on Twitter? The brain tumor community is connecting through the hashtag #btsm. We'd love to see a survivor such as yourself join us for our monthly tweet chat: 1st Sundays of every month at 6pm PT/9pm ET. I am @TheLizArmy. Keep up the good work!

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    Replies
    1. Hi Liz, I'm familiar with your blog. You're brilliant, thank you for sharing your story so liberally! I don't have a Twitter account, but I'm happy to share the info about your monthly tweet chat on my resources page, and get the word out to my friends! So nice to hear from you. :)

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    2. Hi Jess - my husband was just diagnosed with a grade III astrocytoma. His neurosurgeon was able to remove about 90% of the tumor and my husband starts radiation next week. Our oncologist will determine whether chemo is necessary based on the response to radiation. About halfway through his radiation, my husband will have an MRI to measure the effect of the radiation. I understand that surgery followed by radiation is standard procedure but at what point should we have a second opinion? When we get the results of the MRI halfway through radiation or when our oncologist makes a determination whether chemo is needed later this summer?
      thanks so much!

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    3. Hi Anonymous, I'm so sorry to hear about your husband! It's wonderful that the NS was able to remove 90%, that's fantastic. I've never heard of an oncologist basing chemotherapy on the response to radiation. If anything, I thought they based it on pathology, or follow the STUPP protocol. Interesting. Do you mind sharing the center you're going through? It's a different style of approach, but that doesn't mean it's wrong. If you were to get another opinion, I don't see why you would wait. Other than the interference with treatment, perhaps. Of course, you could always mail off your husband's records and do conference calls to see what the second opinions hold. Most NOs pair rad/chemo together because they're stronger together rather than apart, so I'm a little bit confused by your doctor's protocol.

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  4. Thanks, Jess. I probably misspoke - I think ultimately, our oncologist is waiting for the results of genetic testing of the tumor to determine the next steps. We're being treated at the Austin Brain Tumor Center and our oncologist was a long-term neuro-oncologist at MD Anderson. He indicated that he usually combines radiation and chemo with grade IV's and more aggressive grade III's.

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    1. Oh that's okay, I misspeak all the time! :) Have you received the results yet? I'm pleased you're being treated at a specific brain tumor center - that's fantastic! I'm sure they know exactly what they're doing.

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  5. Hello Jessica,

    Sorry to hear about the latest MRI results, hopefully it is just scar tissue. I've been following your blog for awhile now, since a few months after my wife got her diagnosis (aa3). It has been very informative and helpful, to see another person in a similar situation adjust to a new life and share their experiences and wisdom so honestly. My wife just had her second craniotomy for recurrence last week and we just received the pathology results today. If you would like to chat my email is rayw8988@gmail.com. I know you're very busy corresponding with others so I understand if I don't hear from you. We're in Nanaimo B.C. and I have been in contact with Stephen Western for a year or so, we were going to meet up one day but it didn't work out. He's been very helpful. All the best,
    Ray

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    1. Hi Ray, It's nice to meet you! I just shot off an email, sorry for the delay. I'm looking forward to learning from you guys and getting to know you.

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  6. Hi Jessica, thank you for your website. My husband dx with grade 2 astrocytoma, it is gliomatosis cerebri type, wild type, but good news is MGMT methylated. He is currently taking TMZ only and his next scan is tomorrow. I am wanting to do DCVax but he doesn't qualify for current trials. May I get your German Dr info, please.Thank you!!!!! Angela email is: rhlgator@gmail

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    1. Angela, I am so sorry to hear about your husband! I just sent a quick email. Please check out the wonderful patient/caregiver/researcher run website: http://btcocktails.blogspot.com/. It's a fabulous resource, and a great way to interact and learn from others.

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  7. This comment has been removed by a blog administrator.

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    1. Emmett, I deleted your comment, I don't find any interest in a "competition" specifically when it comes to cancer patients. I will not be contacting you. If this is a misunderstanding, you can explain by commenting on this thread.

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  8. Hi, My son has a diffuse grade 111 anaplastic astrocytoma called gliomatosis cerebri.
    Could you inform me of the clinic in germany doing your DC vaccinations. We have been researching this option. thanks!

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    Replies
    1. Hi Julie, I just sent you a private email from your website. Hope that works, and I'll be thinking of you and your son.

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  9. Hi Jessica! I noticed your blog and I greatly appreciate the stories you are willing to share with others. You're doing amazing work! My name is Abby, and I’m currently a student at Calvin College in Grand Rapids, MI working on a project called CancerEd. My team and I are developing curriculum materials to teach children about cancer in an interactive but scientifically accurate way. We are looking to send out a survey to parents who have had cancer to better understand how they communicate with their children about cancer and we would love your help with this! If you could email me at ans29@students.calvin.edu, I would love to give you more information about the survey and about our project. Hope to hear from you soon! Thanks!

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  10. Abby, what a cool project! I would love to help. I'll shoot out an email to you right now.

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  11. Hi Jessica,

    Can you please contact me at bob@cancerdocs.org ?
    I'd love to have an intro with you, explore ways we can collaborate helping patients & supporters.

    Thanks in advance

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  12. Bob, You have been emailed. I'm intrigued.

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  13. Hi Jessica, I'm new to your blog, but I sure do appreciate your posts. I have stage iv colon cancer. Your disease started from the top and mine from the bottom, (ha!) but I can empathize with your experiences. I am currently in the process of consulting with Dr. Chang in New York and was wondering if you could give me some insight into the clinic. Did you feel it was worth the $900 an hour? Not looking for medical advice, just a general "vibe" about the clinic and interactions. Thank you. Best of luck with the next phase of your "plan." milana2983@hotmail.co

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    Replies
    1. Hi AJ, I just wrote you a private email, but yes, I think Dr Chang is a valuable resource. I submit his office visits to my insurance (as out-of-network) and they cover a portion of them (thankfully). It's best to come with a plan where you're as informed as possible about various treatments you're interested in trying, but that's true with any doctor. Get your money's worth by being prepared. Come with copies of the research you're interested in mirroring, come with dosing ideas, and concerns. By the way, you're hilarious! From the bottom to the top, we can help each other navigate. Anything I can do for you, I will.

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  14. Hi Jessica! I was also a San Juan island girl. I want to donate $100 a month to your medical bills. I know it may be a drop in the bucket, but your blog inspires mr. My mother passed from cancer several years ago, and I deeply wish she had access to some of the therapies that I hope you have access to. Much love xo

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    Replies
    1. Leah, You are amazing! What a generous offer! I am incredibly touched. I'll email you right now.

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  15. Oops! Me not mr! Sheesh autocorrect! Feel free to email me at leahtaylorbiology@gmail.com. Much love to you.

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  16. Hi, Jessica. My 6 years old duaghter has brain stem glioma.
    Could you tell me contact info of the clinic in Germany doing your DC/NDV vaccinations. We want to try this possibility.

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    Replies
    1. Dmitri, I'm going through old comments, making sure I've responded to everyone, I believe I emailed you, am I correct?

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  17. Hi Jessica, I'm about to turn 35 years old and was diagnosed with breast cancer at 33. Like you, I've tried A LOT of different paths to heal and witnessed so many courageous people along the way. I've shared my story via social media and blog at www.carlyhana.com (been on hiatus. getting back to it shortly). I'm committed to doing my part in making a difference in the world. As of late, I partnered with a company using the power of business to solve social and environmental issues. Our mission is to change the game in the beauty industry through truth and transparency by getting safe, nontoxic products into the hands and homes of everyone. This has been a more lighthearted and fun way for me to effect change. I'd love to connect on several different levels. I consider myself quite educated, and might be able to offer a few resources. Although, it appears you're quite consumed at the moment so no pressure if it doesn't feel aligned. I'm currently on 'maintenance' and receive treatment every 3 months. Keep up the great work you're doing in the world. Love & light. Xx, Carly

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    1. I checked out your site, and read more about your story/life. Dang if we don't have a lot of similarities, not the least of which is that we both have a "B" cancer, we're badasses, we're childless, we're divorced, we're diagnosed at arguably the prime of our lives. I like where you're going with the beauty products, and would like to learn more. I will email you - sorry it took me so long to respond! xo

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  18. I just want you to know that I watched "My Final Days" and I was so inspired, in awe, amazed and blown away by your beautiful soul, face, spirit and attitude that I just HAD to find out where to you what an AWESOME human being you truly are! Your love story, wonderful husband and your spirit are just mind blowing! I have a 34 year old friend diagnosed with a Glioblastoma brain tumor 7 months ago and I pray for her everyday. I feel you will live a long and fabulous life because you are helping so many people with your story and showing ALL OF US how to REALLY live in the moment and not dwell on life's difficult struggles. May you be blessed everyday and feel as well as you can. I will hold you in my heart and prayers. Warmly. Randi (Beth) Aronson

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    Replies
    1. Thank you Randi! You are so sweet! It is very humbling, to have someone take the time to find me and give me a compliment. I appreciate the prayers, and the love, and I'm really sorry to hear about your 34 year old friend. If there's anything I can do to help, please let me know! There are a lot of amazing resources. I appreciate you and am sending you a virtual hug right now. :) xoxo

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  19. Dear Jess I watched your story unfold the other night and was humbled by your courage and Dans devotion. We go through this amazing life and get one chance to get it right; we pray that we find the right person to build memories with, a soul mate to the very end...you are both so blessed to have one another. Some of us find love in college and yet you met Dan as a child; obviously God was working his magic right from the beginning.
    After the story aired I immediately tried searching for you and was so happy that I came across your blog....I felt 'Bingo! I found them!'....until I was devastated to read Dans post. I've been checking on you ever since and was so happy to see that you are feeling well enough to post again.
    I'm so sorry for all that you're going through, I've lost several members of my family to cancer and currently I'm my dads full time caregiver (he's battling

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    Replies
    1. Thank you so much Jeannie, God certainly has worked his magic in my life. Many, many miracles, in my opinion. I am so pleased you googled me and found the blog! I'm looking forward talking more via email. And I'm so sorry about your dad.

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  20. Sorry, my iPad had a glitch and wouldn't let me type anymore...
    My Dads battling Cholangiocarcinoma (bile duct cancer). I spend about 3-4 hours each night researching alternative treatments for him, of which I was glad to see he's taking many of the same supplements that you are. I noticed that you are taking Venom Toxin (he is too). I was lucky enough to get 10 bottles directly from LabioFam in Cuba. I was hoping you can tell me how many drops you're taking? I only have him on 5 drops in the am & pm, but noticed that you are taking the therapy every 4 hrs? Any input would be greatly appreciated...
    I don't know if you have an easy accessibility to your toxin, if you don't, I can send you 5 bottles that are unopened and sealed....my Moms traveling to Cuba in Sept (22) and can replace my inventory (and yours if need be?) please let me know how I can help you... Email me if you can - Firegirly1@gmail.com (retired FF:)
    Sending you love, appreciation, all of my strength, virtual brownies and a huge hug:) Rest well....xoxo

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    Replies
    1. You are so sweet! I will email you. There are different types of the chlorotoxin, and the Labio Fam, he way I understand it, is homeopathic. I get it from a clinic that doesn't treat the venom. It comes and I make two different dilutions, in distilled water, and there's a nasal and oral administration. The dosing is based on my pathology and current cancer status, based off of the most recent scan results. Anyway, I will email you today and we can discuss more. I'm so pleased you found me, and I will keep your father in my heart, hoping for healing. We will talk soon!

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  22. Jess,
    I just watched your story on "My Last Words" and I'm in tears. I was diagnosed with a brain tumor at 29 (sound familiar), surgery at 30, paralyzed on the right side of my body, two years (so far) of OT, PT, vision therapy, chemo, radiation... but I'm alive! If there is ANY advice you could give me I would greatly appreciate it. Our stories just sounded so much alike that I had to reach out to you!
    Thank you so much for sharing... it meant a lot to me to hear a good outcome.
    Shannon

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    1. "My Final Days", I'm so worked up I forgot the name!

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  23. Oh my god, it DOES sound familiar! Wow. You have been through a lot. I don't know what your current mental state is, by as far as advice goes, I like to remember that all we have to do is live long enough to utilize each little scientific advance. And that we are stronger together, that no one person has all the answers. That's why need to work together and share our knowledge/experiences. It will help us make the most informed decisions and help protect us. I'm sure you're familiar with the websites Astrocytoma Options and Our Brain Tumor Cocktails and Stories (both of which are listed in my resources page). Those are incredible resources, and a great way to educate yourself and connect with other patients/caregivers. If you want to keep in touch via email, let me know! I'm not as efficient or timely as I would like, but it's not because I don't care. I'll do my best! And about the title of the show, I like your title better. 😂❤️

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  24. I couldn't agree more... working together has definitely been beneficial! I did read your entire blog and I will certainly check out those websites. I would love to communicate through email (slchilds11@gmail.com), but as far as efficiency goes... holy cow you're quicker than I am! Lol. The title... oh my!

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    1. Hi Shannon, I just sent a private email. I'm really not very efficient, I don't want to misguide you on my organizational skills. Ha! Hope to hear back from you when you get a chance. Take care!

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  25. I couldn't agree more... working together has definitely been beneficial! I did read your entire blog and I will certainly check out those websites. I would love to communicate through email (slchilds11@gmail.com), but as far as efficiency goes... holy cow you're quicker than I am! Lol. The title... oh my!

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    1. Can't remember if I emailed you yet or not. Brain tumor problems! :) Please let me know if I haven't.

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  26. Hi, Jessica.

    Don't know if you remember but I (and my wife Senga) met you in the coffee shop in Friday Harbour a couple of weeks ago and you've been on my mind ever since. I'm so happy for you that you are recovered from your seizure and I wish you many days without another. You are a very lovely and inspirational young woman and I'm very happy to have met you. As for the bike on the bus rack - it's pretty easy and once you've done it a couple of times you'll have no trouble. I'm sure the driver will help you get the hang of it. Much good fortune to you and Dan and if you are ever in South Surrey/White Rock we'd love to see you.

    Geoff

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    1. Hi Geoff, of course I remember you! Both of you. :) What a fun, chance meeting at that coffee shop. The Bean, I think it was. Thank you for the compliments, and I appreciate the encouragement about the bike rack. I just know you're right, and it's nothing to fear, really. And sometimes that's all you need, a little encouragement. If we make it up to South Surrey/White Rock, I'll be sure to find you guys! I'm so pleased you found the blog, and chose to send a quick message. It's a wonderful compliment, and it makes me feel very special.

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  27. This comment has been removed by a blog administrator.

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    1. Hi Christine! I will delete your comment (with your email address in there), and will email you directly. :)

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  28. Hi Jess - my husband was diagnosed last April with an anaplastic astrocytoma. In addition to radiation and chemotherapy, our oncologist also recommended use of the Optune device. Unfortunately, our insurance company will not pay for the Optune but I was wondering if you ever considered using Optune and if so, what made you decide not to pursue it. Thanks!!

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    1. Oh that crazy cap, Optune. You know what, I would have looked into it back when I was bald, and I may revisit soon depending on this month's MRI, but it would take a pretty aggressively negative scan report to push me into using it. I'm really sorry your insurance isn't cooperating, that's just disgusting. If he wants it, he should be able to contest that with doctors letters. It seems there's enough data to show the effectiveness.

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  29. Dear Jessica,
    I have a very dear friend battling an Astrocytoma II-III for 7 years. We seem to be running out of options for him and reaching a critical point. I would be thankful if I could email you a brief account of his illness history and receive advice from your experience. BTW I am writing to you from Iran, so we do not have access to many trials and treatments here, but we will try to do out best if you recommend sth. that is not here.

    Best Wishes
    Salma Talebi

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    Replies
    1. Hi Salma! I'm so honored you reached out. And I'm very sorry about your friend. You can respond to this with your email and I will reach out. Of course, I'm not a doctor, but I will help you in any way that I can.

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  30. Hello,

    I am thinking about working with DC therapy, would you be willing to chat offline (in email) about your experience?

    Thank you

    wantinginfogmb@gmail.com

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  31. Hi Jessica!

    I just came across your blog and I love the work you are doing bringing awareness and education to patients living with brain cancer.

    I am reaching out to spread the news about PatientBank. We help patients everywhere own their health by gathering and storing all their medical records. I would love to provide you with a free trial code in exchange for your feedback - then you could gather and store all your medical records in one place!

    Anyway, hope all is well!

    All the best,
    -Kevin

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    1. Hi Kevin,

      I checked out your website, and the system looks really neat! I have a few questions, though. Do the records include images, or is it just documents? Also, I saw that it's $30 per record. That could be quite spendy if you're wanting to get absolutely all of your medical records pertaining to your cancer. (I have a big 'ole briefcase for all my files, I honestly can't imagine the fees that would have been associated.) This service is truly brilliant, and necessary, though, so I'm happy to learn of it!

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  32. Hi Jessica,

    I’m working with a team in development on a new content platform for cancer patients + their families. We've come across your online voice, and we'd love to explore your becoming a contributor. I would love to discuss this with you further, so please send an email to ashley@equalityequation.co if you are interested :)

    I'm looking forward to hearing from you.

    Best,
    Ashley Mason

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    Replies
    1. Hi Ashley. I just shot out an email to you. Thank you for reaching out. I look forward to hearing more!

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  33. Hi Jessica!

    I am a two-time sarcoma fighter. Where do you get your rick Simpson oil? My email is gaanelson@gmail.com

    Love & Light
    Gabrielle

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    Replies
    1. Hi Gabrielle, I'll email you directly. Looking forward to connecting!

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  34. Jessica:

    Hello! I am a physician-scientist at Yale obsessed with glioma, we have an interesting story on PARP inhibitors and IDH-mutant cancers that may be of interest to you. Stephen from Astrocytoma Options sent me yoru info. Please email me at ranjit.bindra@yale.edu if you want some more information on our story. Rarely do i promote stories from our lab this aggressively - we at Yale are just very excited about the data.

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  35. Hey Jess and Dan, I hope you get to read my comment. There is a site called Alliance for Health. They recently posted an article about IV Vitamin C and how it can kill cancer cells. I think it is really important for you to check out. I am currently going through some of these and other IV vitamins and something called Poly VMA to kill off viruses in my body that have made me very sick. Poly VMA is also used for cancer patients.Hope this helps. Carol

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  36. Jessica,

    I'm a new reader and am wondering how you're doing.
    Will you be posting anything new soon?
    Hope you're doing well!

    ReplyDelete

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