Common Variable Immunodeficiency Support Group
Common variable immunodeficiency (CVID) is a group of 20-30 primary immunodeficiencies (PIDs) which have a common set of symptoms but with different underlying causes. CVID's underlying causes are different, but the result of these are that the body doesn't produce sufficient antibodies in response to exposure to pathogens.
Well, I'm not sure how much greater risk we're all at for stomach cancer, but I'm currently at 100%. A few days ago, I was diagnosed with stage four stomach cancer that is also in my lungs and liver. It's all happened very fast. A few weeks ago, I started having trouble swallowing. Then, a little difficulty burping. Then last Friday morning I had a black stool. Then Saturday night I spit up a blood clot. From that moment, my world changed.
Today, I'm still in the hospital and still bleeding inside. I'll have a port installed tomorrow and will likely start some very aggressive chemotherapy and radiation in the afternoon. I've talked with my immunologist and she will increase the frequency of my IVIG to help me through it.
I'm posting this because I want people to be aware of some of the symptoms that could indicate a problem.
By the way, I didn't have any loss of weight or appetite, but I did experience a low grade fever. With the fever and an uncomfortable chest, I started a two week round of antibiotics that I now think may have masked some of the symptoms and could have cost time in the diagnosis. No way to know this for sure.
Life is good, Live it well... And thanks for listening.
Today, I'm still in the hospital and still bleeding inside. I'll have a port installed tomorrow and will likely start some very aggressive chemotherapy and radiation in the afternoon. I've talked with my immunologist and she will increase the frequency of my IVIG to help me through it.
I'm posting this because I want people to be aware of some of the symptoms that could indicate a problem.
By the way, I didn't have any loss of weight or appetite, but I did experience a low grade fever. With the fever and an uncomfortable chest, I started a two week round of antibiotics that I now think may have masked some of the symptoms and could have cost time in the diagnosis. No way to know this for sure.
Life is good, Live it well... And thanks for listening.
I can't tell you how very, very sorry I am to hear of your diagnosis. Having CVID and knowing that we are missing the component that protects us from cancer is scary. Even with IVIG or SCIG it is only partial protection. There are no guarantees.
Thank you so much for posting these warning signs. It's so obvious that you have such a wonderful spirit and high moral character. How unselfish of you to think of others while you are going through this trial yourself. I wish I was there to give you a big hug! Please keep us posted on how you're doing! I wish you my best.
You're right...life IS good...we should all live it well and not take one second for granted. I will be praying for you and that all goes well with your treatment.
I hadn't met you before. Sorry to meet his way. I thank you from the bottom of my heart for sharing. Thank you. I will be thinking of you.
My immunologist is also funded for a study in which she hopes to be able to distinguish which ones of us are more likely to get cancer so those people can be screened more thoroughly for early indicators.
My status: Still bleeding, but it may be slowing down. Port tomorrow, but not positive if I get first chemotherapy/radiation tomorrow. Pretty anxious about the treatment. Just hope to be able to tolerate well enough to keep taking all the drugs over a six month period.
Life is good. Live it well. And, thanks for listening...
I'm glad to hear your bleeding seems to be slowing down.. That is good news. Getting a port will make your treatments a lot easier for you for sure. I know I love mine! I will be praying that all goes well and that you will tolerate the treatment s and will be able to do the complete course as prescribed...and with the very best outcome possible! :-)
i am GRATEFUL for your friendship the last few years.....
and i know you will be around for a few more....
i guess this is a topper to a new job and a new move...you really know how to get your new employer's attention dont you?????
hang in there....things will either get better or worse....50 % odds that it will get better and i say those are dang good odds......
on the bright side you will probably get some good drugs ....they might even take you back to the 60s...... i am sure there are some memories from that time you wouldnt mind repeating!!!
big hugs to you!
to quote a great guy i know ...life is good, live it well, and thanks for listening.......
Sending a big hug,
Mel
I do know my immunologist is watching me closely for lymphoma and stomach cancer issues....mom had non-Hodgkins dx 2004, and she is now in remission, and I had two bleeding ulcers in 2003, from which I would vomit loads of blood {yet none of my military docs thought to do a scope...}. Mom's cancer was stage 3B, and she is in remission-all is possible!
Even with the MS/Lupus like symptoms I have been trying to get a diagnosis nailed down for, my biggest nightmare is a cancer dx. You are my hero-and a great example to follow. Hang in there during treatment-and DON'T be afraid to tell the nurses you need pain meds!!!!!
Shoshi
The result was he was cancer free until he pass away at age 96 of other causes, 8 years later.
I wih you the same luck / good fortune.