Blood Clots

JanJan63 said:

I had one in my leg that

I had one in my leg that moved to my lung and almost killed me. I have an IVC filter in my vena cava to prevent it happenening again. I'm also on blood thinners for life but I take Xaralto which is a capsule so no shots for me, thank goodness. The Folfox was the chemo that gave me the blood clots, I had four in total with the fourth one being the bad one. My onc had told me just to take aspirin for them. Once I got out of the hospital and went to see her and she tried to say it wasn't the chemo despite every other health care professional saying it was, I changed oncs. 

I hope your husband gets some relief soon. Theyre painful!

Jan

Before we knew what was going on he went to the ER twice.  First time it was just his head and Dr thought it was a sinus infection (they tested his heart and everything was okay).  The second time it was his head and neck & arms.  This Dr. thought it was an adverse reaction to medications.  Neither Dr thought about blood clots.  By the time he went in for chemo, the chemo Dr immediately sent him for a ultrasound.  Still haven't heard what day/time scan will be for the vena cava, but Dr thinks he has this, because he has a lot of bruising around his chest, under arms ect.  Tim was always as active as he could be and this has stopped him cold in his tracks.  Worried because Dr said the longest a person stays on chemo is up to 3 (iffy on 4) years, he will be 3 years this Sept.  I'm afraid his body is going to start shutting down or something.

optimist777 said:

I was diagnosed with colon cancer from blood clot (DVD) to leg

So sorry to here about your husband. 

I was initially diagnosed with stage4 colon cancer from a severe DVT to my leg almost 10 years ago.  I had no idea I had cancer before then.  Through a bit of a miracle, (I've had so much bad luck), but at least in this case I had a very good vascular surgeon who was able to repair my leg soon after.  He sort of saved life, more then once, and I'm grateful to him for that.  I had an IVC filter placed by a radiologist as well at that time, which was the worst nightmare I ever had to deal with.  In the very-short term they were concerned with a blood clot moving to my brain or lungs.  However, they never set a date for getting it out.  I was told I'd be put on blood thinners for life, not only because of the cancer, but more importantly due to the IVC filter causing a blockage.  I absolutely hated the blood thinner meds, almost worse then the chemo.  After multiple failed attempts to remove my IVC filter, which I demanded, it wouldn't come out as it was stuck.  I finally went to the vascular surgeon who repaired my leg and he was finally able to remove the IVC filter.  Those IVC filters should actually be illegal, unless they come out a month or two after placement.  They are very dangerious, and cause blockages which are as deadly as if you never had it to begin with.  An IVC filter should only be used long-term (more then 3 months) in extreme circumstances.

I actually lost track over the last 9+ years how many chemo treatments I received but it has to be over a 100.  Oxy, 5FU, Irrino, Avastin, and several others, not to mention radiation.  The point I want to make is if your husband just hangs in there, he might just recover.  There is always hope, and new treatments are on the horizon.  And despite what people say, you can beat this thing.

I'm currently on no chemo at all and living in Hawaii.  The doctors tell me to find a trial but I'm not doing that.  Just eating well and exercising.  My pain level seems to be stable at the moment.  While my CEA numbers are sky high, I don't think about it.  I'm living for each day.  We each have our own way of dealing with things, and I chose not to spend another day of my life for now in the hospital.   

      

We will certainly keep your experience in mind when we deal with this.  As I am typing we still haven't got the time/date for scan scheduled yet, the VA is working on it.  He is just tired of being so swollen, pain from the pressure, and very lightheaded.  Will update when we get a plan.