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Home » Immunotherapies (IL-2, IL-15, PD-1s, etc.) » MDX-1106: The First Transfusion

MDX-1106: The First Transfusion

Posted by on March 4, 2011 in Immunotherapies (IL-2, IL-15, PD-1s, etc.), MDX-1106, Medical Procedures and Other Drugs, My Health Updates - 20 Comments

 

Monday’s transfusion went off without a hitch. My throat did not swell up with an allergic reaction. My eye did not turn red and bloody (which happened to somebody else). No rashes, vomiting or joint pain. My lungs did not freeze up. No hideous little aliens  burst forth from my stomach, and there were no hallucinations involving spider monkeys and whipped cream. All of these were reactions for which the oncology team was on the watch.  Well, most of them.

The liquid pumping into my veins may as well have been saline as MDX 1106. Nothing happened. When we were done, I hopped up and headed over to the food court for some pizza. A very different experience from the IL-2 infusions, which involved fainting, nausea, chills, pains, near organ failure and psychotic clowns with happyface stickers.

The cancer center (do we still use the term ward?) – with its various divisions for radiology and screening, phlebotomy, chemotherapy, radiation therapy, etc. – is all conveniently located in one building at Johns Hopkins, as opposed to being spread out among different buildings as you’ll find at some other facilities.

There is a unit hidden away in the back for research programs, and this is where I go initially to meet with my oncology team. This, I discovered, is why I have my own phlebotomist – there is a separate phlebotomy lab for research patients. During one of the many blood draws I underwent – they removed 18 vials by the time the day was over – I went to the regular phlebotomy lab.

“We don’t usually come over here,” I was told, “but our chairs are full and they’ve got an opening so we’ll take it.”

I wanted to tell them that I didn’t mind getting my blood drawn with commoners. Sometimes I even eat with them.

When it was time for the infusion, we went up to the second floor, past radiology, to the chemotherapy area, which is a private set of several interlocking rooms. Each room is filled with pod-like centers. Big chairs with broad armrests so that you can prop up your forearm invitingly for the IV lines, next to machines that monitor your vitals (heart rate, blood pressure, etc.) In front of each chair sits a table with magazines and a small-screen TV with cable. Think of a first-class seat on an airline flight – except they don’t serve alcoholic drinks. (Don’t worry: I have written a strongly worded letter protesting this outrageous rule.) They even have a stewardess who comes around with the snack cart. Peanuts, pretzels, cookies, juice.  There are a few pods built into the walls, where you can actually stretch out, with the TV on the wall at your feet. Think of a small sleeper cell in a train. I staked out one of these. Dena crawled in next to me and began reading on her iPad. The nurse asked if we wanted to close the drapes so we could have some privacy. I’m not sure what she was implying.

The infusion of the MDX 1106 itself took about an hour, but I was required to stay put in my pod for another hour for observation. They drew blood before the infusion. They drew blood after the infusion. They scheduled one four hours after the infusion and another one four hours after that. This on top of the ten vials of blood they had already drawn in the morning.

Our day had started at 4:30 in the morning so that we could arrive for the 7 a.m. blood draws, ECG, physical exam with the oncologist and then the infusion. It was 6:30 when we left the hospital and 8 p.m. when we arrived home. That’s a fifteen-and-a-half hour day. They’re going to get another strongly worded letter. What do they think we are – child laborers? If I want to put in hours like that I’ll go back to working on Capitol Hill or running drugs in Burma.

There have been some minor side effects since Monday, but I’ll save that for another post. All in all, though, I feel just fine. A little tired but otherwise in perfectly good shape.

  • Bernadette

    Hi Chris,
    I’m very interested in what minor side effects you’ve experienced.

  • admin

    Hi Bernadette,
    I’ll write a more detailed blog update but primarily:

    Fatigue is probably the most significant
    Cough
    Mild rash on the arms and dryness in the skin on the face
    The usual gastrointestinal
    Some passing flu-like aches
    I have had back pain since my last surgery, but it seems it may be exacerbated by the drug

  • Donna

    Hi Chris … just found this ‘reply’ from March 10. Very interested to hear more when you have a chance. Hope those pesky side effects are limited. Are you still at Johns Hopkins? Will you stay there until next scan?
    You are thought of often and hoping for the very best results.

    Donna

  • admin

    Donna and Bernadette: I’ve updated a new post on the MDX 1106 side effects. You can read it here: http://www.ackc.org/blog/mdx1106-side-effects/

  • http://www.gentlewinds.org Lynn

    Hi! Good luck with the MDX 1106…I took it 12 times with no real issues except perhaps my thyroid going haywire but I also took it in combination with 6 peptides. I have stage 4 melanoma but have been NED (no evidence of disease) for one year. My trial was a vaccine trial and our hope it that it will take out the micro cells floating around so I do not have a reoccurance…

  • http://www.gentlewinds.org Lynn

    PS I will continue with an infusion of MDX 1106 without the peptide injections every 3 months for 2 years…as long as I remain NED…

  • Dan B

    Chris I begin on Monday May 2 treatment with MDX 106. I would like to communicate with you about our mutual experiences. Any way to contact you?

  • craig lougheed

    How do you access mdx1106?

  • Joe Z.

    I will be having an appointment with a Doctor at John Hopkins and may be starting the mdx1106 injections if I qualify. My question to any of you that have had this drug is how often is it administered?

    Thanks so much,
    Joe Z.

  • Chris Battle

    Joe, I underwent the MDX 1106 treatment during a Phase 1 trial at Hopkins. I think it may now be in Phase II. However, when I was doing it I had an infusion once every two weeks. I would go in for bloodwork in the morning at around 7:30; once the labs came back and were clear, then I would go to the infusion center there on the 2nd floor. The infusion itself takes about an hour, and then they keep you for monitoring for another hour. I was often done by around lunchtime.

    By the way, I am starting a new blog dedicated to kidney cancer. I intend to crosspost blog pieces here at the ACKC site if they have no objections, but I wanted to start one in which I could lay out my previous experiences from a personal perspective. It is still being built but you can access it now at http://kidneycancerchronicles.com/; I hope to have it fully built-out within the month. This new blog will allow me to answer questions from readers easier than my Caringbridge blog (which doesn’t allow comments) or even this one at ACKC (as I’ll get direct email notifications of comments). Please feel free to follow up on the new blog at any time.

  • Bernadette

    Hi Chris,
    I’m very interested in what minor side effects you’ve experienced.

  • Chris Battle

    Hi Bernadette,I’ll write a more detailed blog update but primarily:
    Fatigue is probably the most significantCoughMild rash on the arms and dryness in the skin on the faceThe usual gastrointestinalSome passing flu-like achesI have had back pain since my last surgery, but it seems it may be exacerbated by the drug

  • Donna

    Hi Chris … just found this ‘reply’ from March 10. Very interested to hear more when you have a chance. Hope those pesky side effects are limited. Are you still at Johns Hopkins? Will you stay there until next scan?You are thought of often and hoping for the very best results.
    Donna

  • Chris Battle

    Donna and Bernadette: I’ve updated a new post on the MDX 1106 side effects. You can read it here: http://bit.ly/xbLr6V

  • Lynn

    Hi! Good luck with the MDX 1106…I took it 12 times with no real issues except perhaps my thyroid going haywire but I also took it in combination with 6 peptides. I have stage 4 melanoma but have been NED (no evidence of disease) for one year. My trial was a vaccine trial and our hope it that it will take out the micro cells floating around so I do not have a reoccurance…

  • Lynn

    PS I will continue with an infusion of MDX 1106 without the peptide injections every 3 months for 2 years…as long as I remain NED…

  • Dan B

    Chris I begin on Monday May 2 treatment with MDX 106. I would like to communicate with you about our mutual experiences. Any way to contact you?

  • Craig Lougheed

    How do you access mdx1106?

  • Joe Z

    I will be having an appointment with a Doctor at John Hopkins and may be starting the mdx1106 injections if I qualify. My question to any of you that have had this drug is how often is it administered?
    Thanks so much,Joe Z.

  • Chris Battle

    I underwent the MDX 1106 treatment during a Phase 1 trial at Johns Hopkins. I think it may now be in Phase II. To get into a clinical trial, you must apply to one of the hospitals that is administering the trial and they will screen you to see if you fit the protocols. When I was doing it I had an infusion once every two weeks. I would go in for bloodwork in the morning at around 7:30; once the labs came back and were clear, then I would go to the infusion center there on the 2nd floor. The infusion itself takes about an hour, and then they keep you for monitoring for another hour. I was often done by around lunchtime. Please feel free to follow up with questions here at any time.

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