How IVIG treatment is going

pain-logo (1)

Today I thought I would write an update on how my IVIG treatment is going.  The graphic above is a good description of the past week or so.  I have felt pain so terrible that it almost doubles me over.  And, I have felt pain in ways that I have not felt since before I started Cytoxan therapy three years ago.

***I have had two IVIG treatments so far.  The third will be next week.  I receive 1 gram per kilogram of weight diluted and given over two days by IV.*** 

They are four weeks apart.  My biggest observation is that the good effects of this treatment do not last four weeks which is the interval between doses.

00000 IVIG

***The treatment does help.  After a few days, I seem to get a burst of energy and reduced pain.  I am able to go through a day with less rest breaks and stay up later at night.  I am even able to move around much better.  And all pain, muscular-skeletal and neuropathic is lessened.  This “better” period lasts about 10 days.*** 

Then, a deterioration begins and a week before the next treatment I am back to a point before any treatment started.  Lots of pain.  Lots of overwhelming fatigue.  Lots of stumbling around when I try to get up.  Torture!

I plan to vocalize my experience next week when I go to my doctor’s office for the next round of treatment.

***I think it would be better to either receive more IVIG, i.e. a larger dose, or receive treatment at 3 week intervals instead of the present 4 week interval.***

I’m still pretty good at covering up how bad I feel.  But my wife can tell that the last few days have been bad.  I know all of us with whatever chronic illness we have try our best to put a smile on our face when we really want to cry.

suffer iceberg

Well, that’s the treatment update.  Good news in there that I get 10 better days per month.  Maybe that’s all I can expect.

***I hope that we can come up with a treatment plan that helps just a bit more.  Because after those 10 better days, I get about a week of pure misery and pain levels that are off the chart.***

But I will fight and stay strong.  You stay strong as well.

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About mcreyscope

Retired / disabled survivor of Stage IV melanoma and paraneoplastic syndrome. Now in a fight with terminal treatment resistant Stage IV Prostate Cancer.
This entry was posted in About Melanoma, Chronic Pain and Chronic Illness, IVIG, Paraneoplastic Syndrome and tagged , , , , , , , , , , , , , . Bookmark the permalink.

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