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MDX-1106: Side Effects

Posted by on March 22, 2011 in Immunotherapies (IL-2, IL-15, PD-1s, etc.), MDX-1106, My Health Updates - 6 Comments

 

 

chemo side effectsNeedle in vein, I eyeballed a priest who approached and sat down in a chair next to the window nook where I was receiving my second infusion of MDX-1106 Wednesday. This can’t be good, I thought. I hadn’t called for a priest. In fact, I was feeling pretty good. This all seemed very premature, if not downright rude. And just when I was about to give the poor man a bit of cancer-manners whatfor, he pulled up his shirt so that a nurse could start sticking him, repeatedly, in the belly with an injection of some sort. Evidently priests get cancer too.

As with the first infusion, Wednesday’s round of chemotherapy went off without a hitch. I say chemotherapy, even though I’m undergoing an immunotherapy treatment, because some of the nurses working in the chemotherapy ward, where I’m receiving the infusion, understandably refer to it as “chemotherapy.” Which drives Dena a little batty. Which is all the more reason to keep doing it. If I get little else from this cancer, I will at least have had the chance to participate in the battification of Dena Battle. Which sounds like a made-for-TV movie. Dena will play herself; Anthony Michael Hall will play me.

After my last blog post, I had promised to provide a list of side effects I’ve experienced so far on this experimental drug. Is it fair to say: None really? That is perhaps an exaggeration but compared to the adverse effects of other treatments – bleeding and the growth of rib-locked tubes, say, with lung surgery or snow-owl hallucinations and vertigo with IL-2 – I feel a little embarrassed to say I’m having any side effects at all.

However, I’m supposed to report even the most minor changes to my nurse, the Fabulous Alice, who will be played by Angelina Jolie in the Lifetime movie referenced above. Here, then, is a list so far:

  • Fatigue is probably the most significant, especially the day of and few days after the infusion; however, as the days pass, the fatigue wears off.
  • Cough – I wasn’t sure whether the drug produced the cough after the last infusion because I came in with a cough prior to the treatment, but there was a clear surge in coughing even as I was getting the infusion Wednesday and it persists today.
  • Some light skin dryness, a mild rash on my arms and some splotchiness on my face.
    Some brief gastrointestinal turmoil.
  • Back pain? I use a question mark because I know that the drug was not responsible for the pain; it was an issue I raised with my oncologist at Duke before coming to Johns Hopkins. However, it does seem plausible that the MDX-1106 has exacerbated the back pain, as it seems to have gotten worse.

Just today I am experiencing something new: A sharp, ongoing pain in my lower jaw that runs upward to my inner ear. It almost feels like an ear infection, if I knew how an ear infection felt. The strange thing with a Phase I trial is that you can’t really know whether a new symptom is really a product of the drug or something that may have developed independently from the treatment. For all I know, this jaw-ear pain is the result of a bad tooth. Or a crawfish in the Tympanic Membrane.

I can’t emphasize enough, though, how different this treatment is from my experience with IL-2. With the latter, I was hospitalized for the week of the treatment, experienced a fair amount of unpleasantness and then needed another week or so to recover after the treatment was over. Plus emotional trauma after being ridiculed by my wife for having clown’s feet due to extreme edema. With MDX-1106, I am for the first time in two years, returning to a normal schedule that could conceivably last for years. I go up to Baltimore once every two weeks but am otherwise able to carry on normally with work and home life.

The big question, of course remains: Is this stuff working?

  • Maria Filorimo

    Chris, hi I have been following your journey my daughter also has RCC papillary Type 2 with 7 tumors in her right lung and 2 in her left. We travel to the NIH in MD. Tay did the Ippy that is it for short, it to was an Immunetherapy. She never made it past Dose 4 because she got the swelling in her pituitary gland and is currently Adrainal Insufficiency. Her tumors last scan were stable. Praying for you both!

  • http://www.gentlewinds.org Lynn

    I have done MDX 1106 with peptides. I am dx’ed as stage 4 melanoma. IN june 2009 I was given 6-9 months to live….so much for statistics…I am still here and I have been without evidence of disease since March 26, 2010. I did MDX 1106 every other week for 12 weeks along with 6 peptide injections in my thigh ( they were not nice at all…giant horse needles with thick gunk). I continue to get the anti pd 1 ( MDX 1106) every 3 months in IV as booster. I had my 3rd booster a couple weeks ago. I do boosters for 2 years. It blew out my thyroid. and it also had a cyst..which was perfect before the MDX 1106…so I am butt dragging tired all the time until they get the synthroid balance in my body.
    I also have dry skin, itch and various aches and pains. I also have a cyst on my adrenal which wasn’t there before the MDX 1106. (cyst is not melanoma). I suppose its a great trade off compared to melanoma. How is your thyroid and adreal glands?

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  • Maria Filorimo

    Chris, hi I have been following your journey my daughter also has RCC papillary Type 2 with 7 tumors in her right lung and 2 in her left. We travel to the NIH in MD. Tay did the Ippy that is it for short, it to was an Immunetherapy. She never made it past Dose 4 because she got the swelling in her pituitary gland and is currently Adrainal Insufficiency. Her tumors last scan were stable. Praying for you both!

  • Lynn

    I have done MDX 1106 with peptides. I am dx’ed as stage 4 melanoma. IN june 2009 I was given 6-9 months to live….so much for statistics…I am still here and I have been without evidence of disease since March 26, 2010. I did MDX 1106 every other week for 12 weeks along with 6 peptide injections in my thigh ( they were not nice at all…giant horse needles with thick gunk). I continue to get the anti pd 1 ( MDX 1106) every 3 months in IV as booster. I had my 3rd booster a couple weeks ago. I do boosters for 2 years. It blew out my thyroid. and it also had a cyst..which was perfect before the MDX 1106…so I am butt dragging tired all the time until they get the synthroid balance in my body.
    I also have dry skin, itch and various aches and pains. I also have a cyst on my adrenal which wasn’t there before the MDX 1106. (cyst is not melanoma). I suppose its a great trade off compared to melanoma. How is your thyroid and adreal glands?

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