First Infusion Tuesday

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sandysp
sandysp Member Posts: 868 Member

Tuesday I have my first infusion of Human Blood Plasma Immunoglobulin g. I have CVID which increases my chances of getting gastric cancer by 50%. Compare that to smoking increasing lung cancer risk by 15% to 30%. The problem is, while the infusions have been proven to help a patient prevent infections, there is not much proof they can help prevent cancer. "gastric, lung and "skin" cancers were mentioned in the information regarding Common Variable Immune Deficiency (CVID). Since Squamous cell is a skin cancer - there you go. I truly believe those who have not tested positive for HPV, and that is most of us here, should learn about this condition. CVID is the most common immune deficiency - thus the name Common Variable Immune Deficiency. It affects about 1 out of 50,000 people although I can't help but believe it is under-diagnosed. The treatments are really expensive and in the past, people diagnosed with it would lose their insurance.

Wish me luck. The infusions have a chance of helping prevent future infections but their effectiveness to prevent cancer has not been substantiated. Lymphoma is another cancer it is related to. The future looks bleak but today I was good. I am good. We only have today anyway.

I guess the only downside, to the infusions themselves however, beside the three to four hours it takes every three weeks more or less is the chance of getting some microbacteria that escapes the cleansing process and could give me an infection such as Hepatitis C. But the insurance company approved it right away - no problem. The Immunologist says they know it saves them money in the long run for people to have the infusions.

Some people never know why they got Anal cancer. In my case, with the diagnosis of Common Variable Immune Deficiency, this question for me has been answered. Right now I am grateful my immune system is getting the help it always needed.

Good luck to everyone. Keep asking questions and advocating for your good health.

Fondly,

Sandy

Comments

  • cap630
    cap630 Member Posts: 151 Member
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    Good luck

    Thank you for sharing this information. It sounds like you are in a good frame of mind.  I will be thinking of you.  We did start this journey at the same time. Please keep us updated.

    ~Carol

  • mp327
    mp327 Member Posts: 4,440 Member
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    Sandy

    Sending you good wishes for a smooth infusion and lots of love and hugs!

  • qv62
    qv62 Member Posts: 434 Member
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    sandysp

    I hope this is a successful mission, it surely sounds like you have done your researsh (wouldn't expect anything less lol) and it surely sounds like the right track to getting healthy, I wish you all the best on this new journey of good health and as always my prayers are with you for all the best, Maybe you can look at those 3 or 4 hours as some forced downtime, hopefully you can take advantage of a good book and tip us off on some good summer reads :)

  • sephie
    sephie Member Posts: 650 Member
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    hey

    good luck with the infusion..... i might have missed this but how did you get the diagnosis????? my brother has had gammaglubulin  infusions for years....he has finally got the dx of lyme disease.....so just wondering how you were diagnosed...thanks  so much.....sephie

  • sandysp
    sandysp Member Posts: 868 Member
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    sephie said:

    hey

    good luck with the infusion..... i might have missed this but how did you get the diagnosis????? my brother has had gammaglubulin  infusions for years....he has finally got the dx of lyme disease.....so just wondering how you were diagnosed...thanks  so much.....sephie

    Thanks everyone

    The infusion went great. I had my own room, TV, I brought my knitting and Samsung Note Tablet. The staff was really attentive. They gave me the infusions in small doses. They say in the future it won't take as long. The first one took 4.5 hours but they say once my body has adjusted it can go in as fast as 2 hours.

    Sephie, I got the diagnosis because the SSNHL (hearing loss) after Pertussis, Anal Cancer, Cervical Cancer and too many cases of pneumonia to count caused my Internist todecide run the test for CVID. When the numbers came back, she sent me to a top Immunologist at Mt. Sinai. I am my Internists third patient with it. She does not have 150,000 patients (one in 50,000)!

    It's debatable whether or not it is genetic but I was a very sick baby and a not well teenager or adult. My grandmother was sure I would never see 21!

    But here we are - this side the ground. 

    Happy Easter everyone!

    Love,

    Sandy

  • mp327
    mp327 Member Posts: 4,440 Member
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    sandysp said:

    Thanks everyone

    The infusion went great. I had my own room, TV, I brought my knitting and Samsung Note Tablet. The staff was really attentive. They gave me the infusions in small doses. They say in the future it won't take as long. The first one took 4.5 hours but they say once my body has adjusted it can go in as fast as 2 hours.

    Sephie, I got the diagnosis because the SSNHL (hearing loss) after Pertussis, Anal Cancer, Cervical Cancer and too many cases of pneumonia to count caused my Internist todecide run the test for CVID. When the numbers came back, she sent me to a top Immunologist at Mt. Sinai. I am my Internists third patient with it. She does not have 150,000 patients (one in 50,000)!

    It's debatable whether or not it is genetic but I was a very sick baby and a not well teenager or adult. My grandmother was sure I would never see 21!

    But here we are - this side the ground. 

    Happy Easter everyone!

    Love,

    Sandy

    Sandy

    I'm so glad your infusion went well.  It sounds like you're in good hands.  I hope you have a Happy Easter too!

  • sephie
    sephie Member Posts: 650 Member
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    sandysp said:

    Thanks everyone

    The infusion went great. I had my own room, TV, I brought my knitting and Samsung Note Tablet. The staff was really attentive. They gave me the infusions in small doses. They say in the future it won't take as long. The first one took 4.5 hours but they say once my body has adjusted it can go in as fast as 2 hours.

    Sephie, I got the diagnosis because the SSNHL (hearing loss) after Pertussis, Anal Cancer, Cervical Cancer and too many cases of pneumonia to count caused my Internist todecide run the test for CVID. When the numbers came back, she sent me to a top Immunologist at Mt. Sinai. I am my Internists third patient with it. She does not have 150,000 patients (one in 50,000)!

    It's debatable whether or not it is genetic but I was a very sick baby and a not well teenager or adult. My grandmother was sure I would never see 21!

    But here we are - this side the ground. 

    Happy Easter everyone!

    Love,

    Sandy

    thx

    thankyou so much for reply......yes, i remember now all the horrible extra illness you dealt with......glad the infusion went ok....happy easter.....sephie