HPV and Immunogobulin G and other things I don't understand

sandysp

Hi everyone,

I got a titanium post in my head but have to wait until February for the processor and to hear again on my left side. As most of you know I am 2.5 years post tx and had an attack of vertigo that left me profoundly (that means absolutely, totally) deaf in my left ear. Then I had a raging "asthma" attack. I was on steroids all summer.

The deafness was such a blow to me I went into a total funk and called the psychiatric department at MSK. I have a wonderful Psychiatrist and Behavioral therapist there now so in that way, the deafness was a good thing. The psychiatrist put me on a mood stabalizer rather than an antidepressant since there is a history of bipolar disorder in my family. He ran blood tests prior.

The preop for the hearing implant called for blood tests. My white blood cell count dropped from 3.6 to 2.5 in the time it took me to go from 50 miligrams to 200 miligrams of the mood stabelizer which was doing wonders for my sleeping! He took me off cold turkey. What's worse, I had a lung inflammation that was causing me to get light headed and the doctor (pulmonologist) put me on steroids before the surgery. I am now on my second round. (As most of you know I have a lot of spots or "freckles" on my lungs). He calls this "Bronchieachisis" or something close to that spelling of a rare dry nature.

My internist called for more blood tests. This showed my Immunogobulin G level to be low. Well you know how I am. I put a lot of things into the computer a lot of different ways. This whole immunity business is an amazing amount of bio chemistry that doesn't read very well!

But when I put in Immunogobulin G and HPV it took me to a lot of Guardasil research. I think the reason we have spots on our lungs may have to do with the HPV which I believe caused my cancers of the cervix and anus but can't prove it since I have no other symptoms and have not testsed positive to my knowledge.

However, I went to an immunologist Friday who thinks the Immunogobulin G is deficient because I have had to take so much prednisone for all the lung inflammations. But they are running tests. I believe I am going to see a new Pulmonologist at Mt. Sinai for a second opinion.

Anyway, for those of you with freckles on your lungs, I thought some of this might be interesting to you. We are only hoping that the pills for the depression caused the white blood cell count to drop. It is a very rare side affect but I am so glad I had the preop which showed how fast it dropped in that period of time. Some luck involved there. I was and am still at an unsatisfactory risk for infection. Apparently one can get immunogobulin infusions. There is no cure for Bronchieachisis which is chronic and can be fatal.

All the best,

Sandy

 

mp327

Hi Sandy!

I always look forward to your updates, however, I'm sorry that you are dealing with additional matters right now.  I hope the blood count issues can be resolved.  That is very interesting about the possible Immunoglobulin G/HPV connection.  My last blood work did not include testing for Im. G, so I don't know where I stand in that regard.  The spots on my lungs, which have been there since my staging scan and before, have always been identified as granuloma related to old histoplasmosis disease. 

I hope your hearing issues will improve once you get the implant. 

Geez, it's always something, isn't it?  I am having some dental issues now and am wondering if all this radiation or chemo have contributed.  I never had bad teeth or gums until the last couple of years.

Take care, my sweet friend, and keep us posted on how you are doing.  Have a wonderful holiday season!

Marynb

Sandy
I am sorry you are going through so much! You are really a trooper. Are lung freckles the same as lung nodules? I suspect they are not, by the way my oncologists are handling the nodules I have.

I hope you heal quickly and that the surgery goes well.

jbug2

Hearing
Interesting post, Sandy! I do hear via processors and wondered what sort of processor you are referring to. (AB here).

June

Lorikat

Blessings and prayers

Blessings and prayers Sandy......

sandysp

Marynb said:

Sandy
I am sorry you are going through so much! You are really a trooper. Are lung freckles the same as lung nodules? I suspect they are not, by the way my oncologists are handling the nodules I have.

I hope you heal quickly and that the surgery goes well.

ha, ha!

We are all such medical novices. I just referred to the term "freckles" since I saw it on this board and thought it sounded better than "broncheachisis, idopathic or metastasis" The Pulmonologist has given MSKCC nothing in the way of an opinion in writing and they are sending me back for another CT scan in January. So the Immunologist at Mt. Sinai who is also interested in this diagnosis pushed me to go back to him and get all my records for her to review including his opinion on the Bronchiachisis. Which means my lungs are "thickening" with each inflammation. Once thickened they don't soften but are permanently damaged. The cillia is not working properly in my lungs so by the time I feel tightness, my lungs are congested but I haven't even coughed yet. I went to him and asked him for my records and his opinion in writing regarding the CT scan. Or I guess you can say I went to his office and requested he do his job.

I am 64 this January so I guess am showing some wear and tear. But the cervical cancer could have killed me before I was thirty so I guess I can't complain.

Hang in there. When is your next lung CT scan? Mine is January 21 on my 64th birthday. I think I am going to try to stay in the city that night in a hotel and see if I can have some fun somewhere.

All the best,

Sandy

sandysp

jbug2 said:

Hearing
Interesting post, Sandy! I do hear via processors and wondered what sort of processor you are referring to. (AB here).

June

Implant

They prescribed a Cochlear Baha to bring the sound from my right ear to my totally deaf left ear. It apparently is in the skull and the processor converts it to be the same speech and sound I hear in my right ear only it will be just like I hear from the left side again. I can turn it up, down or off and control it with my phone.

What kind do you have?

All the best,

Sandy

mp327

sandysp said:

ha, ha!

We are all such medical novices. I just referred to the term "freckles" since I saw it on this board and thought it sounded better than "broncheachisis, idopathic or metastasis" The Pulmonologist has given MSKCC nothing in the way of an opinion in writing and they are sending me back for another CT scan in January. So the Immunologist at Mt. Sinai who is also interested in this diagnosis pushed me to go back to him and get all my records for her to review including his opinion on the Bronchiachisis. Which means my lungs are "thickening" with each inflammation. Once thickened they don't soften but are permanently damaged. The cillia is not working properly in my lungs so by the time I feel tightness, my lungs are congested but I haven't even coughed yet. I went to him and asked him for my records and his opinion in writing regarding the CT scan. Or I guess you can say I went to his office and requested he do his job.

I am 64 this January so I guess am showing some wear and tear. But the cervical cancer could have killed me before I was thirty so I guess I can't complain.

Hang in there. When is your next lung CT scan? Mine is January 21 on my 64th birthday. I think I am going to try to stay in the city that night in a hotel and see if I can have some fun somewhere.

All the best,

Sandy

Sandy

I hope you get answers from your doctors and I want to wish you all good results on your CT scan.  What a way to spend your birthday, but I'm glad you are going to make sure to also have a little fun that day!  I will be keeping you in my prayers for all good news!

sandysp

Lorikat said:

Blessings and prayers

Blessings and prayers Sandy......

Thanks and Back at you

I know you are going through a lot too.

I believe the HPV virus just acts up now and then to cause these many problems. But I can't even prove I have it.

So frustrating. My doctors never talk about hpv. Do yours?

Happy New Year!

Sandy

 

Marynb

sandysp said:

ha, ha!

We are all such medical novices. I just referred to the term "freckles" since I saw it on this board and thought it sounded better than "broncheachisis, idopathic or metastasis" The Pulmonologist has given MSKCC nothing in the way of an opinion in writing and they are sending me back for another CT scan in January. So the Immunologist at Mt. Sinai who is also interested in this diagnosis pushed me to go back to him and get all my records for her to review including his opinion on the Bronchiachisis. Which means my lungs are "thickening" with each inflammation. Once thickened they don't soften but are permanently damaged. The cillia is not working properly in my lungs so by the time I feel tightness, my lungs are congested but I haven't even coughed yet. I went to him and asked him for my records and his opinion in writing regarding the CT scan. Or I guess you can say I went to his office and requested he do his job.

I am 64 this January so I guess am showing some wear and tear. But the cervical cancer could have killed me before I was thirty so I guess I can't complain.

Hang in there. When is your next lung CT scan? Mine is January 21 on my 64th birthday. I think I am going to try to stay in the city that night in a hotel and see if I can have some fun somewhere.

All the best,

Sandy

Sandy
My next scan is Jan. 28th, the day after my 62d birthday! So wouldn't it be great if we got good scans for birthday presents? I am trying to remain positive, but I am terrified this time. Two cancers were enough!!!!

ccfighter

sandysp said:

Thanks and Back at you

I know you are going through a lot too.

I believe the HPV virus just acts up now and then to cause these many problems. But I can't even prove I have it.

So frustrating. My doctors never talk about hpv. Do yours?

Happy New Year!

Sandy

 

Your cancers were most

Your cancers were most certainly caused by HPV.  Virtually all cervical cancers are caused by this virus and over 85% of anal cancers are caused by HPV.  Your doctors don't mention it because it is of little consequence at this point.  There is no cure for. HPV.  There is really no treatment for it either.  Most all of us have this virus in one strain or another.  Most clear the virus with no ill effects.  Some of us though, for whatever reason, end up wii the virus infecting our cells and transforming our DNA to induce cancer.  I am cervical cancer.  ive nver tested positive for HPV, but that is what caused my cancer.  This I know is true.  Hope you are feeling better soon.  Hugs.