Third time’s the charm?

More of the story

Just when you thought it was safe to go back in the water. Or something like that. Seems as though once things start going well, it is just about time to be thrown a curve ball.

Yup, more crap!

Reader’s digest version of where we are today:
• 2011 – diagnosed with Burkitt’s Lymphoma – very fast spreading cancer. Did a ~5 month stint of in-patient chemotherapy with great results. 3 Years later, no signs of that dreaded disease. Kept up w/ blood screening every 3 months and CT / MRI scans every 6 months. I will no longer continue with the CT scans, only blood work for now. Good news!
• 2013 – heart attack – blocked LAD (left anterior descending) artery. Ambulance -> ER -> surgery to install a stent in the artery all within about 3 hours. They call this artery / blockage the “widow maker”. I guess I am really lucky overall. – All set for now, things progressing well.
• 2012 – recurring sinus infections, repeatedly, every 3 – 4 weeks. Continuous doctor visits and prescriptions for anti-biotic which just don’t seem to kill the infection completely – which will bring us to the next “issue”.

All through the recurring sinus problems, I would ask the oncologist about issues with the chemo drugs and the inability for anti-biotics to work. Continually told no, there was no correlation. Also, I kept wondering if the issues were allergy related. This was ruled out as the test for the sinus infection would continually return positive for a specific bacterial infection. Tammy has a co-worker that had breast cancer that informed her of this, a reduced immune system. Every few office visits she (Tammy) would mention this, and I to the oncologist, with the same answer – no.

We will find out differently soon enough.

Fast forward (rewind?) to 2 months ago, I was referred to an Allergist / Immunologist. When I met with this doctor, giving him my history, he took about 5 minutes and asked me if I was on Rituximab (Rituxin) which sounded familiar but I was not positive. A side effect of this drug is killing of your immune system, essentially the “B” cells. Which is good to kill the cancer, bad for ongoing ability to fight infections.

My inability to successfully flush the sinus infections (been dealing with them for 2 years) was a key indicator that something greater was the issue. Looking back, I should have kept pressing for the referral to the Allergist sooner. My fault for taking so long through it all.

The immunologist doc ordered blood tests and had me go for a more in depth (hi-res) CT scan on my lungs. The results showed positive for having no Ia, Iv, or Ig immunoglobulins. Essentially no immune system. Also found a lung inflammation. Nothing serious at this time. Just an annoying cough that would cause a lot of phlegm.

So what does this mean? – I have a hard time fighting infections like sinus (no kidding) and lung (pneumonia) and such.

How do we treat it?

I will need to perform weekly injections of synthetic immunoglobulins. These are created from blood donors (they take parts of the blood from the white cells) and create the product. The one I am starting with is called Gamma Gard. The injections are sub-cutaneous, just below the skin, done on 5 sites at the same time.

This is kind of similar to a diabetic that needs to have a pump to continually feed in their insulin. The only good part is I just need to do it once a week, for about 2 hours. It takes a while for the pump to push the medicine under the skin. The scary part is what is listed as possible side effects and reactions to the medicine..  One of the potential issues is anaphylactic shock. Been there, don’t want to go back again…

Yesterday was my first treatment with Gamma Gard. Since there is a possibility of severe issues, they need to do the first dose in the doctor’s office. All things considered the treatment went without a hitch. All good thus far. I even inserted 4 of the 5 needles myself. They don’t hurt and the process is pretty simple. Just freaky sticking yourself… 🙂

Next week I will have a visiting nurse come here and go through the process with me. Afterwards, as long as I am comfortable, I will start doing this myself. I do not foresee any issues.

The main concern – this is a long term fix. Meaning forever…  I will NOT re-create my immune system. Yet another issue to deal with. Having to order / maintain the meds and supplies. Bring with me on vacations, etc. Just an overall pain in the butt.

… and it may NOT clear up the sinus issues. There is a good possibility, just that the sinus area is very difficult tl clear up normally, never mind with a damaged immune system.

Why am I sharing this?

If I can help one other person to get better – not have infections – It will be great. I know quite a few people that have had (still have) cancer and have been on different chemo drugs.

I would ask each and every one of you (or your loved ones) – If you have issues with infections please go see an immunologist. I can even recommend a real good one! There are things that can be done to help. Might not be the outcome we want. There is help!

mountain bike - get back upSome of the other issues – lack of energy / drive, general feeling of blah, etc. are also things that will definitely be helped with the Ig treatments. The way I have been feeling lately I can only hope and pray that an even better life is ahead! As others have said: It’s not how many times you get knocked down, it’s how many times you get back up again!

So now you all know the rest of the story.. More details and I am sure more to come.

Peace and love,
-Dennis (Tammy too!)

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7 Comments

  1. Lisa on August 28, 2014 at 11:33 pm

    Keep your head up and stay strong. You can and will do this. Love you. Sis

    • Ginny Moretti on August 29, 2014 at 5:40 pm

      Dennis with your attitude and everyone’s prayers you will get through this also. Thank you for putting out that information. God bless.
      Ginny

  2. Dennis Nye on August 28, 2014 at 11:33 pm

    Encouraging words Dennis. Thank you for the blog. Keep on keeping on. We all go through things to varying degrees, and yes as you have noted, its the getting back up that is the important thing. Responding in a positive manner is always the significant thing and will be that way throughout our lives. Thank you again for sharing.

  3. Barbara P. on August 28, 2014 at 11:38 pm

    Thanks for sharing this important information. I know the reactions to chemo are not always immediate but had not thought about immunology even though they give you a very long laundry list of “possible side effects”. Your being positive keeps me positive (or at least not negative).

  4. Penny on August 29, 2014 at 11:02 am

    I’m so sorry to hear everything you are going through. But your strength, courage and your need to want to help others is so uplifting. For anyone living with any kind of disease, its scary. I know. I have moments where I’m out on vacation, or doing something fun, and I wonder “someday, this all could end.” But for today, I enjoy it the best I can, and hope “someday” is a long time for now. You know that Tom and I are always here for you. I know you’re trying to stay healthy, and physically fit, but maybe instead of trying to do all this physical stuff, you need to take a little breath and let yourself re-coupe.

  5. Bernadette on August 29, 2014 at 6:04 pm

    Stay strong my friend – we only wish you the best – all our love Bernie & Tom

  6. Ruanna on September 1, 2014 at 9:47 pm

    Dennis, real sorry you’re having to learn about this first-hand but appreciate your article and the sharing of info. Wishing you much better health going forward.

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