Tuesday, January 17, 2012

January 17

We are winning! In this crazy fight to the death, the score stands at 2 for humanity, 0 for cancer (since the IL-2 treatment and the IL-12 treatment have both yielded responses, I consider both treatments to be wins). We had our standard, very long, series of scans last Wednesday. On Thursday, Dr. Miller gave us the fabulous news that the IL-12 is working. The tumors in my organs are gone. There’s a spot showing on my liver where the tumor was, but it is no longer showing up like a tumor and Dr. Miller believes it is either scar tissue or a kind of hole left by the tumor. And she can’t see the tumor on my pancreas at all. A number of the subcutaneous tumors are also gone, and those that remain have already shrunk significantly. And the best news of all, nothing new has grown anywhere. I knew some of the subcutaneous tumors were shrinking; they are close to the surface and I can feel them from the outside. Going into the appointment Thursday, I was more excited than worried. But I was still anxious because there could be so much going on inside that I can’t feel and it would have devastating to get my hopes up too high and then find out that, yes some of the subcutaneous tumors were shrinking, but more were growing in vital organs. So Jeff and I didn’t tell anyone that we thought it might be working, because we certainly didn’t want to get anyone else’s hopes up only to have any bad news be all the more devastating in that case. But we were right! And we got to hear those sweet, sweet words, “It is working.” Everything we have gone through this past year: all of the worry, all of the pain, all of the sadness; all of the pleading and crying and desperate hoping; all of the physical trauma and sickness and confinement; it was all for something. I’m not sure that I can accurately express that power of that – that it was all for something.  As much as there was hope and positivity during each treatment, there was the fear that it would all be for nothing. This past year is the hardest I have ever worked for anything and the possibility that it could all be for nothing was one of the most frightening and disheartening possibilities I have ever faced. So now we happily wait. We wait until the next scans (February 16th) and if those scans also do not show disease progression, then we wait again until the next scans and so on until there is no evidence of disease (or until there is evidence of disease progression, in which case we move on to the next treatment, but I don’t think that’s going to happen).
The doctors don’t know why there was a delayed response for the treatment to work. They told us at the last scans that they believed the next scans (the ones we had last week) would show tumor growth and we would schedule surgery to remove one or two tumors from my back to use to grow new TIL cells (since we used the other ones for the IL-12 treatment and the ones taken from my ovary did not grow).  But keeping in mind that I was only the 15th person to ever undergo this treatment, and the first person to receive it at the dose they used for me, we would not expect them to have all of the answers yet. That is the whole point of the research they are doing – to find answers to these kinds of questions. And I get free, cutting-edge cancer treatment because I am agreeing to help them find answers to these questions. We are not concerned that there are questions they cannot yet answer for us; this is what we expect. How can they have all of the answers for questions regarding an extremely complex, extremely personalized treatment that has only been done 15 times in the entire world? Obviously they cannot. This is true with all clinical trials. Pharmaceutical companies, or in this case the U.S. Government, are willing to give you their treatments for free in exchange for the data they are collecting regarding your health and treatment response. This data helps them fine tune their treatments/medications until they reach the point where they can be approved for distribution to everyone who may need them. And this process, this option to receive treatments in their infant stages, is saving lives. It is saving my life.
I do have my own theory as to why the IL-12 treatment started working. This is just my theory based on what I saw. I am not a doctor or a scientist. I’m just the treatment recipient. To recap the IL-12 treatment: They removed the tumor on my neck and extracted TIL cells (tumor-infiltrating lymphocytes) that they found in it. In the lab, they then replicated these cells by the billions (because these lymphocytes were found attacking a tumor, they theoretically knew how to recognize tumor and it would be of benefit to me if all of my white cells had their ability). They then genetically altered these cells to express IL-12 once they came into contact with tumor. They then killed my existing immune system with chemo and replaced it with these new, super-powerful, tumor-fighting cells that theoretically had the power to both recognize tumor (and therefore naturally want to attack it) plus the ability to express IL-12 within the tumor, which should enhance their fighting ability. That is the treatment; here is where my theory starts. The reason the response was delayed is because the new cells had no call to action. They were ready and able to fight the cancer, but they had no reason to go out and find it. But then I got sick. I got a bad upper respiratory cold/cold-like virus that lasted almost 4 weeks (I still am not entirely over the cough). In the time I had it, I gave it to both Kai and Jeff who cleared it in about 5 days each. During the time I had the cold, I felt the tumors shrinking. I think that the cold was the call to action that elicited the immune response that sent the new cells out to do battle against the cold. And when they went out to fight the virus, they came upon tumor and attacked. We have no way of knowing if this could be true; because I felt the tumors shrinking while I was sick, it’s my best guess.  But it doesn’t matter why it started working. It only matters that it has started working. And I am confident that this treatment will prove to be my cure. I cannot imagine being able to surpass the elation I felt when Dr. Miller told us the IL-12 is working, but I can guess that being told there is no evidence of disease (that I am considered NED) will be like getting a second chance at life. It won’t be “like it” it will be exactly that. And that will be a sweet, sweet day indeed.
The biggest difference between when we thought it wasn’t working and after being told that it is working is the overall decrease in my constant feeling of dread. For the first time in a year, I woke with a smile instead of the feeling of waking into a nightmare.  A large portion of the weight that constantly bears down on my being has been lifted. I feel freer, more in control, more hopeful than I ever have. I am overjoyed, energetic, genuinely happy. And for that I am eternally thankful. But I don’t remember what it felt like before I had cancer. I don’t remember ever being able to gauge something’s importance on anything other than if it meant life or death. I don’t remember not having this constant weight, the nightmares, the fear, or the worry. I feel the same physically as I did before I was diagnosed. Other than losing my hair and the IL-2 nightmares, I don’t have any lasting physical effects from the cancer or the treatments. But I am an entirely different person emotionally. Beating the physical disease is obviously the most difficult and most important. It is what will keep me alive. But once we do that, my journey is not over. To borrow words of Pink Floyd, I think the most difficult aspect will be to make sure I don’t exchange my walk on part in this war for a lead role in a cage. Once we fight our way out of the physical bonds of this cancer, how do we break free emotionally? How can we just let go of all of that darkness so that we can fully enjoy the new light we’ve been given? And, because of my amazing support system and the incredible love of my family and friends, I was lucky enough to be able to stave off a lot of the darkness that threatened. I cannot imagine how someone whose darkness comprises a greater part of his/her journey is able to re-learn, re-join, and re-live.  I think that it is something I will carry with me always, although I am sure it will diminish as times goes by and life goes on. But I don’t want to forget all of it. I was recently talking with my very wise friend, Tania, who was talking about issues going on in her life. In doing so, she quoted the passage on sorrow and joy from The Prophet by Kahlil Gibran. The passage states: “Then a woman said, Speak to us of Joy and Sorrow. And he answered: Your joy is your sorrow unmasked. And the selfsame well from which your laughter rises was oftentimes filled with your tears. And how else can it be? The deeper that sorrow carved into your being, the more joy you can contain…When you are joyous, look deep into your heart and you shall find it is only that which has given you sorrow that is giving you joy. When you are sorrowful look again in your heart, and you shall see that in truth you are weeping for that which has been your delight.” This passage is the most truthful expression of this journey that I have ever seen. All of the worry and fear and sadness brought by my diagnosis are direct responses to the prospect of losing everything from which I derive joy. And finding out that the treatment is working, that I might not lose everything after all, is my greatest sorrow unmasked. As much as I have said all along that having cancer doesn’t define me as a person, I’ll tell you something that will: beating cancer. Beating cancer will define me. Because of this journey, I am stronger, more aware, and one million times more thankful than I have ever been. I WANT to carry that with me. I will shout from the rooftops when I am told that I am NED. I will wear it on a T-shirt, I will paint it on my house, I will scream it to the world every chance I get. And as we move on to the next stages of our lives, I welcome the sorrow and the joy, at both extremes, because without them, life isn’t worth living.
Over the past month, the world has lost some of my fellow warriors. My ridiculously strong Aunt Vicki lost her 4-year battle with pancreatic cancer; breast cancer/leukemia claimed our dear co-worker, Laura; and my melanoma sister, Samantha, was taken after 8 difficult years of war. While my recent news is wonderful, they remind me that our fight is not over. They remind me that even in celebration, I cannot take even one minute for granted. They strengthen my resolve to both win my battle, and to use the lessons I’ve learned to be a better person. I carry them, and their warrior spirits, with me as I go forward. They flow with my sorrow and fly with my joy every second of every day. Each person’s battles make us all stronger. Each person’s sorrows remind us all to appreciate what we are given. Each person’s joys give us all more hope. We all want the same things. We all want love and happiness and, when push comes to shove, we will all join hands to fight for it together. This recent victory is not mine alone. It is a victory for every person who ever sent us a positive thought, a healing prayer, a message of strength, a sign of love. This cancer is a mountain we are all climbing together, carrying each other as we tire. And we will stand together at the top, arms raised, victory cries on our lips, knowing that because of sorrow we banded together to create great joy. And for that I could not be more thankful.
Today I am thankful for life. I am thankful for all of my amazing doctors both inside and outside the NCI; I am thankful for clinical trials; I am thankful for every act of support gifted to us during our journey; I am thankful for the ability to share good news; I am thankful for Dana who is leading the Jamie Troil Goldfarb team for the Melanoma International Foundation's 2012 fundraising walk in Villanova, PA, this year we plan to walk too (http://www.safefromthesun.org/ - Villanova walk - visit a team page - Jamie Troil Goldfarb's team); I am thankful for all of our amazing family and friends; and as always, I am thankful for my incredible husband Jeff, my best friend, my partner, and my soul mate, and our perfect baby Kai. Now that you’ve taken your first steps, which you did on your 15-month birthday, may you run wild, with the wind in your hair, knowing that each new day is a gift to cherish, to nourish, and to experience to the fullest. And may you allow me as many kisses per day at 15 years that you do at 15 months.

27 comments:

  1. As always beautifully written. Thank you so much for the update, I’ve been waiting. As I have already expressed, I am overjoyed with this news, so very very happy for you. Will continue to keep you and the family in my thoughts and prayers, love ya girl ♥

    ReplyDelete
    Replies
    1. I’m giving a testimony about Dr. KOKOBI the great Herbalist, he has the
      cure to all manner of diseases, he cured my  breast cancer, though I
      went through different website I saw different testimonies about
      different spell casters and herbalist, I was like: ‘Many people have
      the breast cancer remedy, So why are people still suffering from it?’ I thought of
      it, then I decided to contact kokobiherbalremedycentre@gmail.com , I didn’t believe him that
      much, I just wanted to give him a try, he replied my mail and Needed
      some Information about me, then I sent them to him, he prepared it
      (CURE) and sent it to Airfreight Online Courier Service for delivery,
      he gave my details to the Courier Office, they told me that 3-5 days I
      will receive the package and i took the medicine as prescribed by him
      and I went for check-up 1 week after finishing the medicine, I was
      tested breast cancer negative, if you are breast cancer patient or any cancer patient at all. Do me
      a favour for you to contact him and I will try my possible best to make
      sure you get cured, when you contact him, make sure you tell him that
      I referenced you.. contact him via: kokobiherbalremedycentre@gmail.com You can also message him on whatsapp +254746618873 and for more info message me @ pamela.drews77@gmail.com

      Delete
  2. That was so beautiful! I am so happy for you and your family. I was reading with tears in my eyes hoping one day soon I will be writing a similar blog! You are inspirational!

    ReplyDelete
  3. Beautifully written. Congratulations on you wonderful news!

    ReplyDelete
  4. I'm so happy for you, great news - thanks for reporting such detail, very useful for all of us dealing with this.

    ReplyDelete
  5. Great post and very inspiring. Thanks for for the update.

    ReplyDelete
  6. Hallelujah!
    The blessings continue!
    Many hugs and much love to all of you!

    ReplyDelete
  7. Young lady, I hope you will remember the thoughts you passed on about all you have learned from this experience. That learning makes such a positive difference in your future and how you view things. As I've said before, you are wise beyond your years. Your support system continues to grow while your sickness seems to recede. Jeff, you have shown great love for the woman you married. A love, also, wise beyond your years. Kai, you are the glue in this effort. You are such a wonderful reason to fight to win. You, the Goldfarbs, are a fabulous team. God bless you and yours.
    NKH

    ReplyDelete
  8. I am so ridiculously proud to call myself your friend. Sending positive energy your way and celebrating like a fiend.

    Love,

    Andy Gordon

    ReplyDelete
  9. Jamie, when we heard the news fom your Mom and Bill, we jumped with joy! You have indeed stepped into God's wonderful Light, and in your writing we can see you dancing there. Love and joy, Nancy D.

    ReplyDelete
  10. Jamie, WOW.... what can I say but... you are winning...you are winning!!! Nothing was better to hear than that... nothing was better to think about each morning and each night than that. All your words and thoughts have been taken into my heart to keep and grow. You are amazing you know!!! Love, Karen S.

    ReplyDelete
  11. Such wonderful news, I am so happy for you and your family and friends!!! Thank you as always for sharing you are truly an inspiration.

    ReplyDelete
  12. I am so, so happy to hear of your great, fabulous, amazing, fantastic, wonderful news!!! ( There are not enough adjectives to use in a sentence like this.) The words you use to tell your story resonates with a warrior spirit in such a raw way. I think you need to write a book, for serious. My heart is with you Jamie. Much love and hugs!!!

    ReplyDelete
  13. Jamie..it was wonderful meeting you tonight. And your story is truly inspiring. I am so happy for you and your family. Remain strong and continue your positivity. Jill

    ReplyDelete
  14. Hi Jamie...I am new to your site but I am a Stage 4 melanoma patient at NIH also and just had my act-til completed as of February 1st. I LOVED reading your most recent blog and I could feel your excitement and joy! I will be getting my 1st month's results on the 23rd and am praying I can tell everyone the same good news as you have received! I'd love to keep in touch and hear from you! I have Dr. Miller also (she gave me your web address)and just love her to pieces! God bless and keep up the good work! Sue Newton

    ReplyDelete
  15. Jamie, I am so thrilled to hear your news! My man was getting the full battery (full body PET, brain MRI and neck/chest/abdomen/pelvis) of scans on the 14th and 15th at NCI/NIH...I get so amazed that you all may be crossing paths!!!

    We got our results yesterday (the 22nd)....four "dots" in my Scott's lungs we've been watching for over a year have finally "changed"....one of them is now big enough to biopsy (pea-sized)...VERY slow-growing and barely glowing on the PET.

    Dr. Yang (AN AMAZING AMAZING man!) was so wonderful...talking us through the group clinic wherein they'll discuss my man's case and make some reco's....while this may be where we move from Stage 3c NED (where he held steady for 2 years and 10 days) like you, we feel so incredibly, incredibly fortunate to be in the hands of such a skillful, committed team.

    Your tales of success (AND WINNING!!!) with IL-2 and IL-12 give us such great hope as we strongly believe that's our treatment plan of attack if indeed melanoma was foolish enough to come visit our family when it's so unwelcome.

    Wishing you continued victory and continued celebration. Thank you for your voice, and know I am remembering you, Kai and Jeff by name in my prayers. YOU WILL WIN. :)

    ReplyDelete
  16. How awesome is this! I will be beg. TIL March 11th at MD Anderson...Nick Thornburg is paving my way at the moment as he is there right now at MDA. I just got offered a last minute spot and have my echo stress test, pulmonary function, and brain MRI. Then off to TIL March 11th. So happy for you, you give me HOPE!

    ReplyDelete
  17. Hi Jamie. So happy for your good news!!!!
    My name is Angela. I just had a consult at NIH last week and am considering the same trial that you are on. I would really love to ask you some questions if you are willing. If you are, can you shoot me an e-mail? ang@scolba.com

    Thanks!!

    ReplyDelete
  18. Jamie ~ I am checking in with you to see how you are doing. i am so happy to hear the good news! Thinking about you often and continuing to pray. ((((hugs))) from Texas.

    ReplyDelete


  19. WHAT A GREAT MIRACLE THAT I HAVE EVER SEE IN MY LIFE. My names are Robert Mary
    I’m a citizen of United Kingdom, My younger sister was Sicking of
    breast cancer and her name is Robert Jane, I and my family have taking
    her to all kind of hospital in UK still yet no good result. I decided
    to go to the internet and search for cancer cure so that was how I
    find a lady called Sarah peter she was testifies to the world about
    the goodness of a herbal man who has the root and half to cure all
    kind of disease and the herbal email was there. So I decided to
    contact the herbal man for my younger sister help to cure her breast
    cancer. I contacted him and told him my problem he told me that I
    should not worry that my sister cancer will be cure, he told me that
    there is a medicine that he is going to give me that I will cook it
    and give it to my sister to drink for one week, so I ask how can I
    receive the cure that I am in UK, he told me
    That I will pay for the delivery service. The courier service can
    transport it to me so he told me the amount I will pay, so my dad paid
    for the delivery fee. two days later I receive the cure from the
    courier service so I used it as the herbal man instructed me to,
    before the week complete my sister cancer was healed and it was like a
    dream to me not knowing that it was physical I and my family were very
    happy about the miracle of Doctor so my dad wanted to pay him 5
    million us dollars the herbal man did not accept the offer from my dad,but I don't know why he did not accept the offer,he only said
    I should tell the world about him and his miracle he perform so am now
    here to tell the world about him if you or your relative is having any
    kind of disease that you can't get from the hospital please contact
    Dr.ogididanspelltemple@gmail.com or WhatsApp him +2347067393105,message him on instragram dr.ogididanspelltemple for the cure, he will help you out
    with any problems you have.To get more information you can message me via email robertmary8947@gmail.com

    ReplyDelete
  20. I am very much delighted. To everyone reading this,i want to inform the public on how i got cured from stage 2 ovarian cancer by Dr Itua Herbal Medicines. i have been suffering from ovarian cancer, and i have also taken treatment from my doctor but no way out,few weeks back i came on the internet to see if i will be able to get any information as to curing Cancers, on my search i saw various testimony of people who was healed from Uterine Cancers and Brain Tumors by the good doctor, called Dr Itua. without any hesitation, i contacted his email: drituaherbalcenter@gmail.com and i wrote him and and he guided me,i asked him for solutions and he started the remedies for me so i started using the medicine, after the period of three weeks given to me by Dr Itua i was completely cured nomore tumors on my body was found anymore. So dear viewer why living your life in therapist or chemo?contact him now on WhatsApp +2348149277967 he is able to cure the listed diseases:Arthritis,Amyotrophic Lateral Scoliosis,Brain Tumor,Fibromyalgia,Pancreative Cancer,Fluoroquinolone ToxicityBladder cancer,Brain cancer,Hiv,Herpes,Esophageal cancer,Kidney cancer,Gallbladder cancer,Gestational trophoblastic disease,Head and neck cancer,Hodgkin lymphoma,Thyroid Cancer,Uterine cancer,Fibroid,Angiopathy, Ataxia,
    Intestinal cancer,Hpv,Lung cancer,Melanoma,Mesothelioma,Multiple myeloma,Neuroendocrine tumors
    Non-Hodgkin lymphoma,Oral cancer,Ovarian cancer,Sinus cancer,Hepatitis,Skin cancer,Soft tissue sarcoma,Spinal cancer,Stomach cancer,Leukemia,Liver cancer,Vaginal cancer,Vulvar cancer,Alzheimer's disease,Chronic Diarrhea,Copd,Parkinson,Als,Adrenocortical carcinoma  Infectious mononucleosis.
    Testicular cancer,Tach Diseases,Throat cancer,Ocd,
    Syndrome Fibrodysplasia Ossificans ProgresSclerosis,

    ReplyDelete
  21. There are some natural remedies that can be used in the prevention and eliminate diabetes totally. However, the single most important aspect of a diabetes control plan is adopting a wholesome lifestyle Inner Peace, Nutritious and Healthy Diet, and Regular Physical Exercise. A state of inner peace and self-contentment is essential to enjoying a good physical health and overall well-being. The inner peace and self contentment is a just a state of mind.People with diabetes diseases often use complementary and alternative medicine. I diagnosed diabetes in 2010. Was at work feeling unusually tired and sleepy. I borrowed a cyclometer from a co-worker and tested at 760. Went immediately to my doctor and he gave me prescriptions like: Insulin ,Sulfonamides,Thiazolidinediones but Could not get the cure rather to reduce the pain but bring back the pain again. i found a woman testimony name Comfort online how Dr Akhigbe cure her HIV  and I also contacted the doctor and after I took his medication as instructed, I am now completely free from diabetes by doctor Akhigbe herbal medicine.So diabetes patients reading this testimony to contact his email     drrealakhigbe@gmail.com   or his Number   +2348142454860   He also use his herbal herbs to diseases like:SPIDER BITE, SCHIZOPHRENIA, LUPUS,EXTERNAL INFECTION, COMMON COLD, JOINT PAIN, EPILEPSY,STROKE,TUBERCULOSIS ,STOMACH DISEASE. ECZEMA, GOUT, PROGENITOR, EATING DISORDER, LOWER RESPIRATORY INFECTION,  DIABETICS,HERPES,HIV/AIDS, ;ALS,  CANCER , TUMOR,  VIGOUR, HALITOSIS,  MENINGITIS, WAIST PAIN ,HEPATITIS A AND B,ASTHMA, HEART DISEASE, CHRONIC DISEASE. NAUSEA VOMITING OR DIARRHEA,KIDNEY DISEASE. HEARING  LOSSDr Akhigbe is a good man and he heal anybody that comes to him. here is email    drrealakhigbe@gmail.com    and his Number +2349010754824

    ReplyDelete
  22. I was diagnosed as HEPATITIS B carrier in 2013 with fibrosis of the
    liver already present. I started on antiviral medications which
    reduced the viral load initially. After a couple of years the virus
    became resistant. I started on HEPATITIS B Herbal treatment from
    ULTIMATE LIFE CLINIC there website is https://ultimatelifeclinic.com) in March, 2020. Their
    treatment totally reversed the virus. I did another blood test after
    the 6 months long treatment and tested negative to the virus. Amazing
    treatment! This treatment is a breakthrough for all HBV carriers.

    ReplyDelete
  23. Very Good And Interesting Articles And Information.
    http://185.201.8.224

    ReplyDelete
  24. [ ] I'm here to testify about the great work Dr Ehimare did for me. I have been suffering from (HERPES) disease for the past 5 years and had constant pain, especially in my knees. During the first year,I had faith in God that i would be healed someday.This disease started circulating all over my body and i have been taking treatment from my doctor, few weeks ago I came across a testimony of one lady on the internet testifying about a Man called Dr Ehimare on how he cured her from HIV Virus. And she also gave the email address of this man and advise anybody to contact Dr Ehimare for help for any kind of sickness that he would be of help, so I emailed him on ( Drehimare3@gmail.com ) telling him about my (HERPES Virus) he told me not to worry that i was going to be cured!! Well i never believed it,, well after all the procedures and remedy given to me by this man few weeks later i started experiencing changes all over me as Dr Ehimare assured me that i will be cured,after some time i went to my doctor to confirmed if i have be finally healed behold it was TRUE, So
    - [ ] friends my advise is if you have such sickness or any other at all you can contact Dr ehimare via email. { Drehimare3@gmail.com }or call or what sapp him on + 1 (267) 691-1087
    - [ ] DR Ehimare CAN AS WELL CURE THE FOLLOWING DISEASE:-
    - [ ] HIV/AIDS
    - [ ] HERPES
    - [ ] CANCER
    - [ ] ALS
    - [ ] cancer
    - [ ] Diabetes

    ReplyDelete